Nervous About First Tilt Table Test

[southbel]

I've been reading so much on this board in recent weeks and feel like I finally found a group that understands! Just a bit of history on me. I've always had 'issues' with my low blood pressure that would cause occasional faints, headaches, etc. However, it was intermittent and not severe. Suddenly, on August 24th of this year, I had a very bad tachycardia episode and thought for sure I was having a heart attack! As my husband rushed me to the ER, I passed out. Once there, they did all kinds of tests: stress test, echo, scan, blood tests, etc. Everything came back normal except for my elevated heart rate. After some beta blocker by IV and fluids, I seemed fine and was discharged. Problem was that I never really got better. I continued to have episodes of passing out and high heart rate just on standing. I've lost 15 pounds just from the nausea alone. It's been pretty severe since that episode.

Went to my PCP and she suggested thyroid as she has every other time I've gone for fainting issues. It was, as usual, negative. Then she decided it was anxiety and prescribed me Xanax. At that point, my husband lost it because he was sure it was NOT anxiety and he's been witness to this so many times that I can understand his frustration. Found a new doctor and within the first 10 minutes, she felt confident it was some type of dysautonomia. Was referred to the Cardiologist who took less than that to decide the same thing. Onto the Electrophysiologist today and he described my symptoms to me - he was spot on! I was pretty symptomatic today and he took my BP and pulse in his office sitting and standing and there was a significant difference. He scheduled me for a tilt table test first thing tomorrow morning. He said they want to move fast on this because the severity of my symptoms are pretty bad.

I am so happy to be getting something done because I do not last longer than 10-15 minutes standing right now but the TTT makes me really, really nervous. I know how absolutely horrible I feel when I pass out or even start to pass out. When I've tried the poor man's tilt test at home, I never make it past ten minutes and my machine can never get that last reading because it just errors out. I think the part that terrifies me is that at home I can immediately lay down but on the test, I will be strapped in and standing through the pain as the blood pools in my legs, the nausea, the shortness of breath - argh!! Am i worried for nothing? Is it really that bad? And in another irrational thought, I'm terrified that it will be the one day that it doesn't show anything! I am having a really hard time right now and just living a normal life has been near impossible for me in the last month.

Oh and just one more question. Did anyone have their symptoms suddenly get severe or start out of the blue without anything that seemed to cause them? I was just making my daughter's 16th birthday cake when I had that first bad episode and it's been very bad every since then.

[jpjd59]

I'm so sorry to hear that you are going through this.

I wouldn't stress over the tilt table test. My daughter had the TTT 15 months ago and she said it wasn't really that bad. (We were sure she had POTS but we also had the fear that it wouldn't show anything and we would be back at square one). Well, it did show that she has POTS.

She was a vibrant, active 23 year old one day and the next day she was having chest pains, vertigo, etc. (this happened 2 weeks after a viral illness so the doctors suspect that is what triggered it).

[misstraci]

Sorry to hear your story and what you've been going through. This is not fun at all. My illness came out of the blue. Yours definitely sounds like POTS to me! Don't be afraid of the TTT, I know its different for everyone. Think of it as at least you will get a diagnosis from it. Mine was a bad experience because the nitroglycerine made my heartrate shoot pretty high. Good luck, welcome, and keep us informed!!!

[abbyw]

I never had a TTT, but you certainly sound like you have POTS and I'm happy you found a doctor who knows about dysautonomia. From other posts, I think that they will lie you back down if they see you are fainting.

I just wanted to answer your question about sudden onset. There are lots of us with sudden onset. I was also fine one day and dizzy all the time the next. A five minute walk had me lying on the couch to recover for hours, when the previous day I had been taking my half hour speed walk as usual.

[MomtoGiuliana]

Welcome although I am sorry you had to find us.

I know I felt worse for a day or so after my TTT. I think it is reasonable to expect that might be the case. But it was not a horrible experience and it got me diagnosed.

Hope you get the answers and treatment you need soon.

[Chaos]

Welcome! Nice to hear that you were able to get in with some docs that actually knew about dysautonomias and were able to get you a possible diagnosis fairly quickly. That's amazing right there!

As far as the TTT, it's different for everyone and at each facility as to how they're done. Personally, I've had 4 and have never been given nitro or any other drug during the test. They've not been a good time, and I've been wiped out afterwards, sometimes for days, but like others have said, at least it's finally a positive test result. I think a lot of us were really nervous going into the TTT because we've all had so many tests run that came back "normal" that you're always are afraid this will be just another false lead in trying to get some answers. It sure sounds like you're on the right path to diagnosis though and sounds like you have some good docs on your team so that's definitely a huge step!

Good luck and keep us posted on how it goes tomorrow.

[southbel]

The doctor gave me some information about my tilt table test so I was able to understand what they are going to do. He said that they would first do some blood work and other tests before the TTT. Then they would first have me up for 45 minutes. After that, they are going to give me adrenaline and then another 45 minutes up. He doesn't think I'll last that long and quite frankly, I can't imagine standing that long. I've tried the poor man's tilt table test I've read about and the longest I've ever lasted is 11 minutes. How does the poor man's version compare to the TTT? Is one more specific than the other or have a longer/shorter duration? I know they want me to fast and not even have water starting at midnight tonight. My own poor man's version was not done in a fasting state.

I'm actually surprised I am this nervous about this test. I've never been nervous about anything else before, even surgery. I think it's the idea of passing out that bugs me so much. I hate the feeling so very much that I am genuinely dreading if it happens tomorrow.

[southbel]

I posted a new topic that details out my TTT and the 'results'. It wasn't that bad - not fun but really the anticipation was worse than the actual test.